1. health and fitness
2. disorders

Issue 43 | Volume 14 | Winter 2014
EXECUTI V E CO R N E R
OFFICERS
Tracy Cleghorn, President
1st Vice President: Scott Boling
2nd Vice President: Mark Antell
Rea Watson, Secretary
Douglas Hartsough, Treasurer
Matthew Compton, Past President
Ring in the New Year!
S
ince 2015 is just around the corner, I thought this was a great opportunity to
look back on a busy and wonderful 2014 and look ahead to 2015.
PUBLICATIONS COMMITTEE
Margie Yancey, Vice Chair
Jill Williams
Barbara Chang
Lori Long
2014 was full of amazing growth:
• We welcomed Washington, Alaska, Michigan, and Eastern Pennsylvania as
new member organizations. We are now proud to be 41 member organizations
strong!
MISSION
• We held our 1st annual regional Gears for Good bike ride in New Hampshire
and our 4th annual 156 mile West Virginia to DC ride, raising over $90,000 for
HFA’s emergency assistance program for families.
The Hemophilia Federation of America is a
national non-profit organization that assists and
advocates for the bleeding disorders community.
• We are currently in our 3rd year with our CHOICE project — Community
Having Opportunity to Influence Care Equity. CHOICE is a project supported
by the Centers for Disease Control and Prevention aimed at collecting information regarding health experience of people who have a doctor-diagnosed
bleeding disorder and do not receive care at a federally-funded hemophilia
treatment center. Over 500 people have completed the online or paper-based
survey and shared their experience with us in both English and Spanish!
Dateline Federation is published four times
a year by the HFA, 820 First St., NE, Suite 720,
Washington, DC 20002. Toll Free Number:
800.230.9797; Local Number: 202.675.6984;
Fax: 972.616.6211. Requests for permission to
translate and/or reprint contents of
Dateline Federation should be directed to the
Editor at [email protected]. Dateline
Federation is available as a PDF file from the
HFA website at www.hemophiliafed.org.
Plans are in full swing for our 21st annual Symposium to be held March 26 – 28
in beautiful St. Louis. Registration is open! Go to www.hemophiliafed.org for
more information.
Perhaps now is the time that you’re thinking about some year-end giving ideas.
Bleeding disorders such as hemophilia and von Willebrand Disease are extremely costly. By supporting HFA, you help educate, empower, and support families
affected by these disorders. You can donate online in memory or in honor of a
loved one.
DISCLAIMER
The material provided in Dateline Federation
is provided for general purposes only. HFA does
not give medical advice or engage in the practice
of medicine and recommends that you consult
with your physician or local treatment center
before beginning any form of treatment.
Are you currently a member of HFA? If not, now is a great time to join or renew your membership for 2015. As a member, you have access to our programs
and services, and will receive regular print and electronic communications and
policy action alerts for the bleeding disorders community.
A huge thank you to every one of YOU for making 2014 a wonderful
year for HFA. Best wishes to you and your family for a joyous holiday season, and a healthy 2015. I look forward
to seeing you in St. Louis!
Warm regards,
Tracy Cleghorn
Board President
Join or
© 2014 Hemophilia Federation of America.
All rights reserved.
CONTRIBUTORS
Special thanks to HFA community
members, staff and speakers who
contributed to this issue.
Rich Pezzillo, Communications Director
Shelly Mattson, Editor
Kristin Mitchell Design, Graphic Design
Michael DeGrandpre, Graphic Design
Gina Sierra, Photographer
Philicity Sivley, Epic Impressions Photography
Katie Verb, JD
Wendy Owens
Elaine Chan, MSW, MPH
Lauren Neybert, MSW
Sonji Wilkes
Randi Clites
renew your
HFA membership
in 2015!
www.hemophiliafed.org/member
FDA Hosts Bleeding Disorders
Patient-Focused Meeting
By Katie Verb, HFA Advocacy & Government Relations Manager
O
n Monday, September 22, members of the bleeding disorders community were
given the opportunity to share their treatment experiences with the Food and
Drug Administration (FDA). As part of the renewal of the Prescription Drug User Fee
Act (PDUFA V) in 2012, the FDA must incorporate the patient perspective into their
regulatory decision-making. To accomplish this, the FDA is holding a series of Patient Focused Drug Development meetings seeking the input of patients in 20 disease groups to assess drugs and treatment options. Patients provide an important and
unique context for the FDA as they develop their new approach to rulemaking using
the Benefit-Risk Assessment Framework. This assessment for drug approval gathers
information from multiple sources including physicians, scientific data, and patients,
then weighs the benefits and risks of a certain treatment.
HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, background, and
with several different conditions came out to share with the FDA their hopes, fears,
and trials in treating their conditions. So many great opinions were shared, covering
two open-ended topics set by the FDA.
The first topic dealt with the effects of bleeding
disorders that matter most to patients. The FDA
sought information on which symptoms had the
most impact on daily life, which specific activities
were negatively impacted by having a bleeding disorder, and how symptoms have evolved over time.
YOUR VOICE.
BE HEARD.
Dateline Federation
3
The second topic focused more on treatments: which treatments were most popular,
how well they work, what were the most significant disadvantages of current treatments,
how they’ve changed over time and what
aspects of life have been improved by
treatment regimens.
One of the most significant things that
patients spoke about at the meeting
was their experience with inhibitors. We
heard the frustration patients feel with
the lack of understanding about how
inhibitors are developed, and how difficult they are to manage. There was a call
among the community for more focus on
the treatment and diagnosis of inhibitors.
The Patient Focused Drug Development
meeting for those with a bleeding disorder has ended. However, patients can
continue to be heard and help the FDA
develop a better understanding of inhibitors by reporting the formation of an inhibitor to the FDA through the FDA Adverse Event Reporting System (FAERS).
Consumers are encouraged to report
adverse side effects to drugs that are approved by the FDA and can do so via the
FDA’s Consumer Voluntary Reporting
Form found on the FDA site. Once a negative side effect is reported, it is evaluated by clinical reviewers at the Center for
Drug Evaluation and Research (CDER)
and the Center for Biologics Evaluation
and Research (CBER).
Excerpts from community members’ testimonies during the FDA Meeting:
“A subcutaneous shot would be great because of the ease of use. I’m very
worried about the longevity of my veins, as they are in rough shape already.
It would also be extremely helpful to have a device, similar to a glucose meter
folks with diabetes use, that people with hemophilia could use to check their
factor levels. Invest in the children living with hemophilia. Invest in me, and
invest my daughters’ future children. Invest in finding a cure.”
— Mark, adult man living with hemophilia, hepatitis C, and HIV
“The most critical treatment concern for members of our community is that
treatments are safe. We do not forget the staggering impact HIV/hepatitis C
tainted products had on this community. The emotional impact was not only on
the health of those affected but also on the entire family unit.”
— Kimberly, HFA Executive Director
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Dateline Federation | Winter 2014
Important information
about inhibitors:
The CDC found these
critical gaps:
Recently, a six year study was released by the Centers for
Disease Control and Prevention (CDC) had six key
findings about inhibitors:
• Because there is no effective monitoring system,
the actual number of people with hemophilia with
an inhibitor in the United States is not known.*
• All people with hemophilia are at risk for developing
inhibitors.
• The impact of risk factors (characteristics, conditions,
or behaviors that can increase or decrease the risk for
developing an inhibitor) on inhibitors is not fully
understood.*
• One-third of newly-developed inhibitors were found
in people with non-severe hemophilia.
• One-half were over the age of 5 years.
• One quarter had used infused factor for more than 150 days.
• Six out of ten people with hemophilia with an inhibitor
had no symptoms.
• Regular screening of people with hemophilia for early
detection of an inhibitor by the CDC laboratory is feasible,
and will inform efforts to measure rates of this
complication.
• An estimated 60% of people with an inhibitor do not
have symptoms, but may develop health problems
from an undetected inhibitor.*
• People with hemophilia receiving care in federally
funded hemophilia treatment centers (HTC) will be
tested each year for an inhibitor by the CDC Division
of Blood Disorders laboratory as part of the blood
monitoring program called Community Counts.*
• The thousands of hemophilia patients who are not
cared for through an HTC may not be screened.
Regular testing for an inhibitor is important because the treatment to get rid of the inhibitor is more successful when an inhibitor
is identified early. By reporting inhibitors as an adverse event, regulatory agencies will be able to compile and study more data to
determine the best actions to treat and prevent inhibitors. You could be responsible for improving product safety by encouraging
the FDA to communicate new safety information to the public, update a product’s label, and/or restrict use of the drug. In very rare
cases, the FDA may pull the drug from market. n n
Continue to be heard by reporting your inhibitor as an adverse event to the FDA by visiting
www.hemophiliafed.org/inhibitors
“We need much better inhibitor surveillance. Currently, we don’t know how
many people get inhibitors and which products might have higher risks. A
recent study in Europe revealed the inhibitor rate in previously untreated, severe
hemophilia A patients is 32%. Think about it, 1 out of every 3 patients. Is this
acceptable? I think maybe we need some new approaches. What if, we set a goal
to eliminate inhibitors within the next 10 years? If we work together, and look
for solutions, I believe they can be found. Only then, will we ALL be able to participate in the
dream of a better future.” — Debbie, mother of a son with hemophilia and an inhibitor
“I’ve seen treatment progress from dried plasma to fractionated plasma, to plasma concentrates, to recombinant clotting factor, to long lasting factors. In 2002,
I was a test subject for gene therapy. With each leap, the condition became
easier to manage” — Dan, adult man living with hemophilia, hepatitis C, and HIV
*Cited From CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) website: http://www.cdc.gov/ncbddd/index.html.
Winter 2014 | Dateline Federation
5
SURVEY ENDS IN MARCH 2015!
Time is Running Out. Help Us, Help You!
By Wendy Owens, CHOICE Principal Investigator/Project Manager
H
FA’s CHOICE Project is heading into its fourth year.
Through a cooperative agreement with the Centers for
Disease Control and Prevention (CDC), HFA is running the
CHOICE (Community Having Opportunity to Influence Care Equity) Project. We have about 6 more
months left to get as many people as possible involved in the project by having them
take the survey. Each person who takes
the survey helps improve the lives of
everyone in the bleeding disorders
community.
For those who have yet to take it, the
CHOICE survey asks questions about
diagnosis, bleeding history, treatment,
insurance coverage, quality of life, and
quality of care. The information collected
from the survey will be used to understand
the health of people with bleeding disorders,
both those who do not receive care at federally-funded HTCs and also those who receive HTC care. It will also be
used to identify issues that need further understanding, such
as where care is being obtained, what complications are being
experienced, and what treatment is being used.
Though the primary focus of the CHOICE Project is to collect
information regarding health experiences of people who have
a doctor-diagnosed bleeding disorder and do not receive care
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Dateline Federation | Winter 2014
at a federally-funded hemophilia treatment center (HTC), HFA
is asking everyone in the bleeding disorders community to
take the CHOICE survey. So here is a call to action: please contact anyone you know with a bleeding disorder, including carriers, and ask them to take the CHOICE
survey. The 20 minutes they spend answering
the survey questions can make a genuine
difference in the lives of others.
A big thank to all of the community
members who have taken the CHOICE
survey so far. A special thanks to all
of the women with bleeding disorders
who have taken the CHOICE survey
and made us aware of the issues you
face. The data you shared, as well as your
forthright and insightful feedback, is helping us identify issues women with bleeding
disorders face nationally and at the local level.
Hearing from women via the CHOICE survey is critical to advancing our legislative and personal advocacy efforts
on behalf of women!
If you have a bleeding disorder, your voice should be heard —
no matter where you get your care. You matter and it is your
choice to participate in the CHOICE Project. To find out how
to take part in the CHOICE project, call 800-230-9797 or go to
choice.hemophiliafed.org. n n
Winter 2014 | Dateline Federation
7
ing
s
Stories of Hope and Thanks
By Elaine Chan, HFA Program Coordinator
S
ince its inception, the Helping Hands program has assisted
countless families during their time of need. In the past
year, Helping Hands has received over 200 requests for assistance in basic living expenses and medically necessary items
and equipment. As 2014 comes to an end, Helping Hands revisited some of these families to see how things have changed.
tor
Early this spring, Helping
Hands met a young family on
the brink of foreclosure after
a series of events caused the
family to fall behind in their
expenses. We were introduced
to a family of six, whose two
sons have hemophilia A. The
family got behind on their
mortgage payments after different family members experienced one illness after another, which resulted in multiple
hospitalizations. The family
became dependent on the
mother’s income after her husband was laid off; but in order
to take care of her family, she
missed many work days. During this time, one of her sons
experienced a prolong bleed that resulted in multiple hospital
visits. When the family thought they had the opportunity to
get a breather and her husband had secured a temporary position, the family’s only car broke down. This unexpected expense caused their already tight budget to crumble. Soon, they
defaulted on their mortgage, and they found themselves on the
brink of foreclosure. Helping Hands was able to assist the family in paying part of the minimal payment to avoid foreclosure
as the parents worked on picking up extra hours to make ends
meet.
Bd
Br ally, the husband was able to turn his temporary job into a full
time position!
Late this summer, Helping Hands received a request from a local hemophilia organization to assist a family with their utility bill when the family experienced a sudden loss of income.
The family of three included a single mother and her two young
children. The family have been
able to make their monthly
Thank you
expenses without significant
for your assistance.
difficulty from the mother’s
I appreciate all you do
full time employment, until
for the community.
she was laid off without significant notice. She went from
–Helping Hands Recipient
having a minimal but stable
income to no income in a
matter of a week! While she
had to worry about securing
a new job placement, her son
experienced several bleeding
episodes that resulted in multiple trips to their hemophilia
treatment center and doctor’s
office. The demands of caring for her son strained her
job search, but she was finally
able to secure a job by the
time she was referred to Helping Hands. Helping Hands was
able to assist her pay the past-due electric bill to avoid shut off,
allowing her to focus on starting her new job and maintaining a
warm and stable home for her children.
$500,000+
Since 2008, Helping Hands
has given this amount back
to members of the bleeding
disorders community.
Ds in
on
Since Helping Hands was able to help them get caught up, they
were offered an opportunity to do a modification on their loan,
dropping their monthly mortgage payment by $100. Addition-
Moms in
on
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Dateline Federation | Winter 2014
Since Helping Hands stepped in, the family has been able to
work off their bills, and the mother is proud to tell us that she’s
going to start taking classes next spring in hopes of finding a
better career, allowing her to provide a safe and secure home
for her children.
Thank you for everyone who has supported the Helping Hands
program. Your support allows HFA to continue the crucial safety net for the bleeding disorder community! n n
more Helping Hands on page 10…
Winter 2014 | Dateline Federation
9
What Helping Hand applicants have to say:
“Between paying bills and everything else,
I didn’t think I could afford this Medic
Alert bracelet. Knowing that my
child has the bracelet
gives me some security that
he can be treated correctly if he gets into
any accident or gets hurt. THANK YOU.”
“THANK YOU so much. We have been
without power for the last week and
it has been so rough
going back and
forth to my
parents’
home.
Thank you
from the
bottom of
“Oh wow. I don’t
my heart for
know what to say.
getting my
THANK YOU.
lights back on.”
You have no idea
how this helped
my family.”
10
10
Dateline
Dateline Federation
Federation || Winter
Winter 2014
2014
“THANK YOU
so much. You guys
were my last hope.
I really didn’t know
how I was going
to pay rent.”
“Both of my ankles
are shot and I had no way
to pay for these shoe
inserts and
braces.
THANK YOU
for helping
out!”
Untold Stories from Caregivers
T
he bleeding disorders community is made up of dedicated caregivers. However, caregivers can often feel stressed, overwhelmed and burnt out. Therefore, it is important for caregivers to remember to take time just for them. Caregivers often
feel guilty or selfish for paying attention to their own needs. But despite these common feelings, prioritizing a little time for
yourself each day can go a long way in managing stress—which will better equip you to take care of yourself and others. To
recognize November as National Caregiver Month, HFA shared stories from moms, dads, grandparents, spouses, and other
family members about their unconditional love, dedication, and support to those living with a bleeding disorder. Below are
some practical tips for caregivers, and two powerful perspectives written by a 16-year-old about his younger brother, and
from a wife of a man who has hemophilia.
REMINDERS FOR CAREGIVERS TO PRACTICE SELF-CARE:
MOVE YOUR BODY. Take a walk, stretch, run, dance, practice yoga, play a sport. Do whatever you enjoy doing to get your
body moving.
LEARN TO SAY ‘NO.’ If adding something else to your already busy plate is going to induce more stress, learn that it is
okay to say “no.” You’re only one person, you can’t do everything.
EAT WELL. Caregivers are often so focused on making sure everyone else is fed and eating nutritiously that they often
forget about themselves. Eat a balanced meal and take time to enjoy eating rather than gobbling it down between tasks.
PRIORITIZE ‘ME TIME.’ Take a little time for yourself each day. Read a book, meditate or engage in a prayer or spiritual
practice if that comforts you, write in a journal, or listen to music. Even if you only have 5 minutes per day to spare, do something just for you.
FORGIVE YOURSELF. When things don’t go as expected or planned, we often place blame on ourselves. Take a moment
to acknowledge these feelings, but then release them. None of are perfect.
REMIND YOURSELF OF THE POSITIVE. Take some time each day to remember the positives in your life, such as family, friends, or whatever else makes you feel happy. Keep this in mind.
ASK FOR HELP. Talk to trusted family members and friends when you need help or just need someone to listen. Do not
feel shameful if you think you might need to talk with a professional like a psychologist or social worker. Taking care of your
mental health is just as important as going to the doctor for a physical check-up.
A Caregivers Perspective:
The Unaffected Sibling
By Noah Workman
My
brother Evan was born on July 3rd, 2007. Two days
after he was born, he was diagnosed with severe hemophilia A. I was eight years old when he was born and had
never heard of this condition. It was difficult for me to grasp
that my little brother would not live a ‘normal’ life. I remember
crying to my mom and saying “How could this happen?” Every
time I made a wish in a fountain, I wished that my little brother
could be healthy. That’s all I wished for. Why couldn’t my wish
come true?
When Evan was about one-and-a-half years old, he had a head
bleed and was sent home with a PICC line for my mom to give
him factor until he was able to get a port. He was admitted to the
Noah and his brother Evan.
hospital a couple of weeks later because he had a fever. During
his second day hospitalized my dad and I went to spend the day
with him and my mom.
Evan was playing in the toy room. I was put in charge of watching him when my parents stepped out for a minute. Evan had
his eyes fixed on the TV, staring at it with his right hand on a
more Caregivers on page 26…
Winter 2014 | Dateline Federation
11
Wearing Advocacy
On Your Sleeve
“Who knew being
an advocate could
be so much fun?”
“I’m proud
to support
this HFA
awareness
campaign!”
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Dateline Federation | Winter 2014
“I love supporting
my friends with
a bleeding
disorder!”
D
uring Hemophilia Awareness Month, our “I Love Someone
with Hemophilia/vWD/Bleeding Disorders” images became an
instant icon for our community, reaching over 300,000 people on
social media. But the advocacy didn’t stop there! You asked us to help
you spread the word further and wider, so this summer we began
selling these designs on shirts and hoodies through limited edition
campaigns.
With your support, we sold over 1,000 shirts & hoodies, raising over
$10,000 to help bring the programs and services you love. More than
that, you’ve found some amazing, inspiring, and creative ways to spread
awareness with these shirts. Here are a few samples you’ve shared with
us. Remember: advocacy can be fun! n n
Dominican Republic
Mexico
Taiwan
Saudi Arabia
“This shirt
helps me be
an advocate
wherever
I go!”
Canada
Puerto Rico
Winter 2014 | Dateline Federation
13
Ds in
on
Community Spotlight:
Beards for Bleeders
By Sonji Wilkes, HFA Programs Coordinator
J
ohn Bruno is truly a Dad in
Action. HFA recently asked
John a few questions about his
involvement in the community.
John sets a great example for
all of those affected by a bleeding disorder. “I’m just looking
for a way to do my part in supporting
this great community.”
Moms in
on
Join John in his efforts by participating
in Beards for Bleeders or the Cherry Pie
Challenge and consider choosing HFA
as the benefactor – funds raised go directly back to support our programs and
services for people living with a bleeding
disorder.
WHAT IS YOUR
CONNECTION TO THE
BLEEDING DISORDERS
COMMUNITY?
JOHN B: After my son Alexander
was born two and half years ago, my
wife Diane and I held presentations in
our basement to teach our extended family about hemophilia – a new diagnosis for
us. I was recently elected to the New England Hemophilia Association’s (NEHA)
Board of Directors, and participated
in HFA’s first regional Gears for Good
bike ride in New Hampshire this June.
I currently work at Raytheon and own a
martial arts school, teaching Taekwondo
and Krav Maga. Diane and I live with our
son, Alexander who is two, and our infant
daughter, Annabelle, in Methuen, Mass.
Alexander was diagnosed with an inhibitor as an infant and is doing fantastic;
while also being a great big brother and
spending time with his new sister.
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Dateline Federation | Winter 2014
HOW DID YOU GET INVOLVED
IN FUNDRAISING?
JOHN B: Initially spurred by encouragement from our extended family,
we have set up more than six fundraising events ranging from a brew
fest, horseshoe tournaments, scavenger hunts, card tournaments, and March
Madness bracket challenges.
The idea for the Beard challenge was born when I noticed how long my cousin Steve’s
beard had grown in a short six months. Steve, my father-in-law Joe, and I began making plans to raise money by having people sponsor them to grow out their beards for
six months; we just needed a good excuse to grow one. When another cousin of mine
joined in, I realized I might be on to something.
HOW DOES BEARDS FOR BLEEDERS WORK?
JOHN B: I started by posting it on Facebook in a few groups, and it quickly
spread. We had to come up with some way to connect everyone that was asking
questions, so I made a website (beardsforbleeders.org) and we came up with simple
guidelines: six months to a year with no shaving, but participants can trim the neck
and upper lip.
We also made it so each person who was going to grow a beard with us was in charge
of their own sponsors, and could give the money they raise to any local, national, or
world non-profits supporting bleeding disorders. This then became a reality as the
emails started rolling in. We grew much faster and larger than the three of us had ever
expected.
HOW MANY PEOPLE ARE SIGNED UP FOR
BEARDS FOR BLEEDERS?
JOHN B: To date, Beards for Bleeders has 47 “growers,” in five different countries. At two weeks into the fundraiser, the website had over 2,000 views with
donations rolling in.
“I’ve always wanted to try to grow
in a full beard. This gave me a good excuse
and to raise funds/awareness at the same time.”
— Eric, Ohio, father of a son with hemophilia
“Growing this beard
is a great
conversation starter.
I love to do
whatever I can to be
an advocate
for our cause.”
— Vaughn, Maryland, mild hemophilia
John B.
Eric
DO YOU HAVE OTHER
FUNDRAISING INITIATIVES
PLANNED FOR THE BLEEDING
DISORDERS COMMUNITY?
JOHN B: I have started a new fundraising initiative, “The Cherry Pie Challenge.”
Much like the viral “Ice Bucket Challenge” that swept
social media this summer, the Cherry Pie Challenge consists of
participants getting “pied” in the face for a $10 donation, or $100 to avoid
being “pied.”
I am again encouraging participants to give to any bleeding disorders
non-profit of their choice. A group of friends recently completed the
Challenge, including several young men with hemophilia gleefully
“pieing” their parents with a cherry pie. n n
Jerry
Max
Shawn
“At first my coworkers were not on board.
However, once I started showing the flyers I made and
telling them why, most thought it a wonderful cause.
My boss is also fully behind the idea.”
— Shawn, Maryland, father of a son with hemophilia and an inhibitor
Winter 2014 | Dateline Federation
15
tor Building Confidence,
Muscle, and Friendship
By Randi Clites, NOHF Program/Advocacy Manger
I
n August 2014, the Northern Ohio Hemophilia Foundation (NOHF) celebrated its seventh
anniversary awards banquet for the summer youth golf program. As many youth with bleeding disorders realize, they can now participate for the first time shoulder to shoulder with
many of their peers in most non-contact sports with the use of prophylactic treatment. Because golf is a sport that provides benefits throughout a lifespan, NOHF replaced traditional
youth support programs with a wellness activity that has reaped some awesome rewards.
Bd
Br T
he goal of HFA’s FitFactor
program is to motivate individuals & families in the bleeding
disorder community to engage in
regular moderate physical activity,
and to maintain a healthy weight
and lifestyle through proper nutrition.
Ds in
on
Our mantra has been, “healthy
bodies bleed less.” At HFA we believe this to be true and we believe
that healthy behaviors begin in
childhood.
The CDC recommends that children get at least one hour of physical activity each day. Children with
hemophilia and other bleeding
disorders should be encouraged to
find physical activities that are safe
and that they enjoy doing. Starting
a regular exercise program is key
to staying healthy and protecting
your joints.
Moms in
on
Tips to Encourage Physical Activity for Kids:
3 Promote and provide opportunities for your kids to be physically active.
Even better, join in the fun with them-be good role models!
3 Make it part of your routine. Daily physical activity will become a habit.
3 Offer positive feedback or a small reward for exercise.
3 Make it fun! Be creative & silly, play tag, “keep it up” with a balloon, or
create silly dances.
3 Allow some choice. Let your child be the guide on what sport or activity
that is of interest to them.
REGULAR PHYSICAL ACTIVITY HELPS CHILDREN:
3 develop stronger muscles and bones
3 reduce the number of joint or muscle bleeds they might experience
3 increase self esteem
3 decrease stress
3 balance their moods
3 sleep better
3 be academically motivated
3 maintain a healthy weight
3 decrease the chance of developing: diabetes, high blood pressure and
high cholesterol
SCHOOL AGE AND OLDER
3 golf
3 swimming
3 yoga
3 tai chi
3 hiking
3 baseball
3 non-contact martial arts
3 dancing
3 walking
3 tennis
3 running
3 cycling (with a helmet)
TODDLERS AND PRESCHOOLERS
3 playing in the sandbox
3 playing catch
3 moving like animals
3 yoga
3 playing at a park
3 swimming
3 blow and catch bubbles
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Dateline Federation | Winter 2014
3 patty cake
3 dancing
When the summer youth golf program began, the goal was to
teach young bleeding disorders patients and their siblings a
sport that they could use to build confidence and help increase
muscle tone and overall strength and flexibility. This would
protect them from target joints bleeds. As the program grew,
a core group of young patients became more engaged in the
bleeding disorders community and encouraged one
another to try more safe activities. Throughout eight weeks, from mid June
through the beginning of August, NOHF
members between 10 and 18 years old meet
at a central location one day a week for three
hours of programming. Typically, the program has 15-20 participants. When they first
meet in the morning, the physical therapist
works them through an appropriate stretching
routine for the group before they head out onto the
course. The players then get small group instruction
from a college-level golf coach/professional. They have two
hours of time with the golf pro at the driving range, putting
green, and on a 9-hole, three-par golf course. After being on the
course, the kids come together for lunch and an educational
discussion provided by a local HTC nurse, NOHF staff mem-
ber, physical therapist, or mentor. At the end of the summer,
NOHF holds a family awards celebration and each participant
is welcome to invite an adult to go out on the course and golf a
full round of play with them to show off their new skills!
We’ve found that the relationships built through our golf program continue to grow year-round. The youth participants look forward to connecting at other NOHF
sponsored events and even make plans to spend
time together at their own homes. They are
also more likely to attend camps or other
wellness sessions when they have a friend
participating. Participants have told us that
they feel more connected through the golf
sessions than any other NOHF program!
One of the added benefits to the program is
having a physical therapist on hand to teach
participants how to take part even if they are recovering from a bleed. This skill is essential for our
kids to get up and take action, both on the course and in life.
With the success of the golf program, NOHF decided to make
youth wellness programs a priority, adding a winter swim program two years ago. Now, in addition to the eight-week summore FitFactor on next page…
Winter 2014 | Dateline Federation
17
FitFactor continued…
2014 Northern Ohio Hemophilia Foundation summer youth golf program participants.
mer golf program, there is an eight-week
winter swim program held at three locations throughout the NOHF area. Each
of the locations provides a 45-minute
instruction to the participants based on
skill level. The winter swim program runs
from the middle of January through the
middle of March, and is open to any aged
patient and their sibling or caregiver. So
far, the program has brought in 20-25 participants each winter. To help with safety
and awareness, NOHF provides bleeding disorders awareness training, coordinated with the local HTC, to each of the
participating pools before the program
begins. At the end of the three regional
sessions, an end of season swim meet
and awards ceremony is held. The meet is
full of fun activities for the whole family
to enjoy! n n
18
Dateline Federation | Winter 2014
NOHF’s Program/Advocacy Manager, Randi Clites, oversees both the summer and winter wellness programs. Randi has been a staff member of NOHF
for three years, after serving as a consumer board member for six years. During her time on the board, she was active in planning newly diagnosed family events along with youth programs. Randi lives in northeastern Ohio with
her husband of 19 years, Matt, and her 12-year-old son Colton (Hemophilia A).
She is currently a senior at Hiram College, pursuing her degree in Business
Management with a minor in Political Science.
Thank You!
Your support makes it possible to
serve our community nationwide!
2014 HFA Funders and Sponsors
VISIONARIES
$500,000+
CHAMPIONS
$300,000+
GUARDIANS
150,000+
CDC Collaborative Partners
Baxter
Bayer HealthCare
*Supports:
Blood Brotherhood
Novo Nordisk, Inc.
Biogen Idec Hemophilia
FitFactor
FANS $10,000+
CHOICE Project
BENEFACTORS
$75,000+
AHF, INC.
CSL Behring
Kedrion
Grifols USA
National Cornerstone
Healthcare Services
Pfizer Pharmaceuticals
BELIEVERS
$25,000+
Accredo’s Hemophilia
Health Services
ARJ Infusion Services
Biomed Pharmaceuticals
Emergent Biosolutions
Hemophilia Alliance
Octapharma
Winter 2014 | Dateline Federation
19
4th Annual Gears for Good DC Ride
3 DAYS
4 STATES
(WV, MD, VA, DC)
24 RIDERS
156 MILES
HUNDREDS OF STORIES SHARED
HUNDREDS OF LAUGHS ALONG THE WAY
“156 miles for my dad who passed away from
$90,000+
hemophilia and complications of hepatitis C, and for
my son who also has hemophilia. THIS RIDE WAS AN
AMAZING BONDING EXPERIENCE WITH OTHERS
IN THE COMMUNITY, something I will never forget.”
RAISED
20
Dateline Federation | Winter 2014
— Dawn Evans, Hemophilia Foundation of Michigan
“
THANK YOU TO OUR CORPORATE SUPPORTERS:
$10,000 level: Baxter • Grifols
$3,000 level: Bayer • Octapharma • Biogen
CVS Caremark • Emergent Biosolutions
THANK YOU TO OUR FOLLOWING MEMBER
ORGANIZATIONS FOR SUPPORTING THE CAUSE:
Hemophilia Foundation of Michigan, Hemophilia of Indiana, Connecticut
Hemophilia Society, Florida Hemophilia Association, Central California
Hemophilia Foundation, Hemophilia Alliance of Maine (HAM),
and New England Hemophilia Association (NEHA),
Hemophilia Foundation of Maryland
This was my first ride, and while
I was a little anxious beforehand, THE
RIDE TOTALLY EXCEEDED MY EXPECTATIONS. The sense of community
and support from all of the riders was
inspiring and helped me get through
some of those tough miles. Knowing
that all of the funds raised were going to
sustain HFA’s Helping Hands program
through the end of the year and support
our families in need was empowering.”
— Lauren Neybert, HFA Staff
“
I ride because my passion for the
hemophilia community drives me to do
more. It is very rewarding to be able to
give back to the community that I love so
dearly. I LOOK FORWARD TO RIDING
AGAIN NEXT YEAR.” — Carletha Gates,
Hemophilia Foundation of Maryland
“
I RODE FOR GEARS FOR GOOD
TO GIVE SOMETHING BACK TO THE
BLEEDING DISORDERS COMMUNITY
because my family and I have received
so much from community members
in the past. Riding in Gears for Good
is like riding with an extended family… and meeting family members you
never knew you had has been terrific!”
— Susi von Oettingen, New Hampshire
“This was my first major fundraising
event and the longest bike ride I had ever done – it was an amazing
experience! The wonderful people I met and the stories we shared
will stay with me for the rest of my life. I AM PROUD TO HAVE
RAISED FUNDS FOR HELPING HANDS in such a fun, exciting,
and enjoyable way!” — Grant Belsham, Emergent Biosolutions
“
When it comes to a chronic condition, you never know when you
will be in need of an assistance program.” — Dennis Mackey, Connecticut
Hemophilia Society
2014 RIDERS: Vaughn Ripley,
Mancini Pat, Howie Haugstad,
Lauren Neybert, Diane Lima,
Allie Boutin, Kimberly Philo,
Rich Pezzillo, Craig Voorhees,
Susi vonOettingen, Paul Brayshaw,
Tom Knoerzer, Grant Belsham,
Dawn Evans, Dennis Mackey,
Kathy Temple, Michael DeGrandpre, Stephen Fitzmaurice,
Wade Channel, Karen Channel,
Barry Haarde
DAY RIDERS: Carletha Gates,
Stephen Long, Mark Antell,
Harvey Gates
Winter 2014 | Dateline Federation
21
Bd
S
Bd
Br Transitioning to Adulthood:
Voices from the Community
By Lauren Neybert, HFA Programs Manager
T
ing
s
Ds in
on
his year, HFA launched Google Hangouts for young adults
with a bleeding disorders (ages 18-35). These interactive
forums provide an unique opportunity for young adults to
connect on important topics from their computer screen.
HFA recently hosted a hangout focusing on employment
and school advocacy. Our Young Adult panelists share their
experiences:
Did you choose to disclose your bleeding
disorder to your employer?
Shelly: Yes, I disclosed to my current employer after I
was hired. I said, “Since we will be working closely together, I wanted to let you know that I have von Willebrand
disease, which is a bleeding disorder in which my blood takes
longer to clot than normal. I have it mostly under control, and
am living a pretty normal life.” I also let him know that there
may be some days I have to miss when I have a bleed, and he
was fine with that, and very understanding.
tor
Moms in
on
Ajie: Yes, I disclosed my condition to my immediate coworkers and boss. We run a two-person system which
means that coverage or replacements could be tough if an emergency arises. Because of our tight and complicated situation, I
had to let my boss know that this situation might come up and
it might hinder me to work for a day. At our first managerial
meeting with our new boss, I disclosed it so we could operate as
Bd
Br Ds in
on
Ajie at Symposium 2014 with Lauren, and Rocky.
22
Dateline Federation | Winter 2014
a team, be familiar with each other, just in case I have a bleeding episode—a long explanation wouldn’t be necessary for me
to get coverage for my shift.
What suggestions would you recommend to
someone with a bleeding disorder when
choosing a college/university?
Tuyen: I think choosing a college that has a culture
you are comfortable with and finding people that you
connect with are important-especially so for someone with a
bleeding disorder. The first year will be difficult because you
are entering a new territory, but having people you enjoy being
around makes it easier. It’s also easier to disclose your condition. I found that because my school was very inviting and inclusive, and I associated myself with the culture, my condition
was a non-factor, and no one viewed me differently.
Shelly: I would recommend a couple of things: 1) Make
sure you have a hemophilia treatment center within reasonable distance and meet the staff before you have an emergency situation, so they know you. 2) See if the university has a
disability resource center. Let them know who you are, and have
them help you with any accommodations you may need.
How else do you advocate for yourself
at work/school?
Tuyen: I am proactive in communicating that I am a hemophiliac in school because I am proud of the strength
of the bleeding disorders community. I think more people need
to know that hemophiliacs face a lot of difficulties but are stronger because of them. The community has provided me so many
opportunities to build leadership skills and just have fun. I make
sure to communicate that while hemophilia in no way defines
me, it definitely is a part of who I am. This is especially true for
interviews with employers. I use hemophilia as a strength and
leverage it as something that makes me stand out and exhibits
my resilience.
What suggestions would you recommend to
someone with a bleeding disorder who is
embarking on their career?
Shelly: Do not disclose about your bleeding disorder until
after you have been hired. A challenge I have faced is that my
extensive involvement in the community is listed on my resume,
but honestly, I have not been asked about why I center my efforts on
that community. If I was asked, I would say that it’s an organization
and community very personal to me and that I care deeply about,
and disclose my health status later, after I had secured the job.
Ajie: Ask lots of questions. There are numerous opportunities and resources. Don’t be afraid to ask and get helpful information. Our condition is special, but I don’t think it should limit
the experiences we have, the things we want to do, or the jobs we
want to have. n n
Know Your Rights
at School and Work:
•
Your rights at school and work are protected by
The Americans with Disabilities Act (ADA). Individuals with disabilities who can perform the essential
functions of their jobs are entitled to equal opportunity.
• Essential Functions are the primary duties for which
you are hired. Attendance is typically an essential duty
for most jobs. Keep in mind: if your condition results in
frequent absences from work, you generally will not be
protected by the ADA.
• Reasonable Accommodations must be accepted by
employers and schools for modifications or adjustments to the individual’s job duties or work environment to help her/him meet the essential functions of
the job/assignment.
• Employers are not required to make accommodations
for an employee with a disability if it would cause an
undue hardship-a major impact on the operation of the
business or would impose a significant expense.
What is a Google Hangout?
Google Hangouts is a free instant messaging and video chat
platform developed by Google and available
via Google Plus. You can connect via your computer as well as your mobile device. In order to
fully participate in HFA’s Young Adult Hangout, you must have a Google Plus account.
Who are they for?
All members of the bleeding disorders community between
the ages of 18-35 years old are encouraged to attend
When do they happen?
In 2015, HFA will host six Young Adult Hangouts throughout
the year. The next Google Hangout is on February 3, 2015 and
the topic is: Dating and Relationships.
Can I suggest a topic?
Absolutely. Please submit your suggestion to
[email protected]. For more information
go to www.hemophiliafed.org
• The ADA prohibits employers from asking medical
questions during interviews. Once the employee is
hired, employers can ask certain medical questions or
require a medical exam, but only if all employees with
the same type of duties are required as well.
• The Family Medical Leave Act (FMLA) requires employers with 50 or more employees to grant eligible
employees with unpaid leave for the birth/care/adoption of a child, to care for a child/spouse/parent with
a serious health condition, or for the employee’s own
serious health condition. A serious health condition for
a person with a bleeding disorder could be a bleeding
episode that would keep the employee from performing essential functions of the job for at least 3 consecutive days and require ongoing treatment.
• The ADA and FMLA are federal laws. Your state may
offer even greater protection, but not less, than the federal laws.
• Call Patient Services Inc.’s (PSI) free and confidential Legal Support Hotline at 877-851-9065 with
questions. n n
Developed by Bill Leach, of Patient Services Inc.,
A.C.C.E.S.S Program
Winter 2014 | Dateline Federation
23
Moms in
on
You know You are a
Hemo Mom When...
Compiled by Infusing Love bloggers
E
veryone finds coping mechanisms to get through stressful situations. Moms quite often bear the brunt of the stress
as caregivers, and many moms of children with bleeding disorders find humor, and especially sarcastic humor, to be a
helpful way to deal with the day-to-day issues of hemophilia or other bleeding disorders.
They see the irony in the bumps and bruises and can’t help but laugh at the crazy things hemo moms say and think to
themselves. Humor has long been seen as a complimentary and beneficial medicine for those faced with chronic illness;
HFA’s “Infusing Love” Mom Bloggers agree, and compiled a list of those moments that are as funny as they are true.
Bumps, Bleeds and Bruises
+ You can spot the slightest limp a mile away.
+ You can identify the varying stages of bruising and
can tell how old one is by color and size.
+ You admire veins of friends, family, and complete
strangers… and you let them know it!
+ You can tell by the way someone walks that
they’re bleeding before they do!
+ You assess any injury by the number of boxes
of factor it will take to get it to stop.
+ You start assessing a bleed on another kid/adult before
you realize that they don’t have a bleeding disorder.
Laundry Day, aka:
Nose and Mouth Bleeds
+ You brag to everyone when your child manages their
first nosebleed totally on their own.
+ You are looking for something in your purse and you
pull out nose pinchers.
+ You have a red washcloth/towel handy in
the car or in your child’s backpack.
+ You’ve learned how hard it can be to get
blood stains out of clothes or car seats.
+ You have learned not to freak out at the site of
what looks like a crime scene on a pillow case, or when
your child wakes up with dried blood everywhere.
+ You have learned that a little peroxide, dishwashing liquid,
and a soak in cold water for several hours will make that
blood stain smaller and smaller to where it eventually
becomes unnoticed.
24
Dateline Federation | Winter 2014
Need Supplies?
+ Your carry-on bag is factor and medical supplies —
NOT clothes.
+ The contents of your refrigerator cost more than
your house and everything else in it.
+ When the ER bag is packed for the grab and go… or you
can “pack” for a trip or ride in less than 5 minutes.
+ You always have a Sharpie marker, tape measure,
syringe, saline flush, band-aid or tourniquet in
your purse and every drawer in your house.
+ You understand the power of a character on a
Band-Aid and how much of a difference it can make.
+ You see something and think it would make a
great ice pack.
School Daze
+ Your child has a permanent pass to the school nurse
and the front office waves you through without going
through the normal check-in procedures.
+ Your child has their name on an icepack in
the nurse’s office.
+ The school nurse calls to see if you have
any extra ice packs you’d like to donate
because the ones you have work so well.
+ You count the number of days your child
completes a FULL day of school.
Headed to the Hospital
+ You are on a first name basis with every nurse
at the hospital.
+ You get the employee discount in the
hospital cafeteria.
+ You have to remind people that you are
not a nurse and have no medical training
outside of hemophilia.
+ You have an amazing confidence and empowerment when
you are telling nurses and physicians what hemophilia is,
the tests that need to be run, the rules for sticking or who
will access the port, and what IV antibiotic is used when
waiting for port infection results.
+ You can interpret blood tests and CBC results.
Me, An Advocate?!
+ You have learned the art of advocacy and
standing up for your child, and have an
active voice in your local and national
bleeding disorder member organization
even if you were once reserved and quiet.
+ You learn how to lobby when you have
never had an interest in politics and law.
+ You can translate insurance terms and Explanation of
Benefits (EOB).
+ You learn how to fight for your choice in providers and
manufacturers.
+ You have an official health insurance representative that
no longer asks for your ID numbers or what you are
calling about… they just apologize for processing
the claim incorrectly and get it fixed.
Life With A Bleeding Disorder
+ You measure days between infusions, not days of the week.
+ You have family contests about who has the biggest bruise
or you play “what’s that shape?” with bruises (much like
laying in the grass looking at clouds).
+ You get through a tough infusion morning and get them
off to school before you have a good cry.
+ Your adult son thanks you for all the needles, all the
adventures, all the support you give him.
+ It’s not uncommon to randomly cry
because you hate watching them
suffer, even if there hasn’t been
an issue in days or weeks.
+ You can put together a wheelchair
with one hand (and blindfolded).
+ It seems easier to get routine things done in crisis mode
than when there’s plenty of time.
+ It’s only after your “other” friends eyes glaze over
do you realize that you and the hemo moms have
been talking in “hemo speak.”
+ You can properly spell hemophilia.
+ You find ways to reach out to other hemo moms that can
relate to or understand what it’s like to find strength when
you are tired and frustrated or you are able to give
tremendous support without even realizing it just
because you listen and have been there.
+ You have become part of a new and extended family
93
after a bleeding disorder diagnosis! n n
“Infusing Love ”
entries since February 2013
Follow us on Facebook for a
new posting each Wednesday!
Winter 2014 | Dateline Federation
25
Caregiver stories continued from page 11…
One of the hardest questions I have ever
been asked is “If you had a magic wand that
could take away your brothers hemophilia,
would you?” And, I feel as though I shouldn’t
be the one to decide if he ‘should’ or ‘should
not’ have hemophilia. Selfishly, hell yes.
Without a doubt, in a heartbeat I would take
that away for him. But, hemophilia has become so much more for my brother, myself,
and my family. It is a community, a vessel for
my brother to become the person he is today.
shelf and his left hand on his side. He was
just so fixated on that TV. My dad came
in and tried to get Evan’s attention, but he
wouldn’t budge. My brother’s face started to
lose color and slowly turned blue. We rushed
him over to the nurses that were down the
hall, where they said “He isn’t breathing!”
One of the nurses gave him the breath of life
which got him breathing on his own again. Sara (mother), Noah, Evan, and Michael
I stood there watching, thinking my brother (father).
had died. Evan suffered another seizure later that night, and had Hemophilia has become a part of our family, and most importo be moved to the PICU. My brother ended up being OK, but tantly, it’s the reason why my brother has met so many amazing,
this was one of the scariest moments of my life.
brave, smart, and funny people. So, no, I guess I would not take
away his hemophilia. I would however, use my magic wand to
Even though my family and I have gone through so much remake his factor cost significantly less money.
lating to my brother’s hemophilia, we’ve never treated him as
different. My brother has been so brave in talking about his con- My wishes for my brother as he grows up are:
dition with people who are curious about his port protruding • For him to know that he should never be afraid or ashamed of
who he really is.
from his chest. There have been conversations about why he
shouldn’t play certain sports. However, at family events, when
everyone plays football and soccer, I have been truly amazed at
how my family remains aware of his needs and includes him in
everything.
• For him to not allow himself to set boundaries because they
will stop him from living life the way he truly wants to live.
• For him to never let hemophilia be a boundary, but instead a
reminder that he can do anything he sets his mind to.
Noah is 16 years old and lives in Tampa, FL with his family. n n
26
Dateline Federation | Winter 2014
A Caregivers Perspective:
Hemo Wife Uncorked
By Stephanie Johnson
I
worry when he’s late coming home and I haven’t heard
from him in a while. I worry when I can’t get a hold of him
on the phone for hours. I worry when he boards a plane for a
trip. I worry when we do any physical activity where there’s
a possibility he might get hurt. I worry when he bumps his
head or has a headache. I worry when he’s walking with even
the slightest limp. I do a lot of worrying.
Reading this, you might think I’m a mom, but I’m not. I’m
the wife of a hemophiliac. He is the love of my life, my best
friend, my soul mate and I can’t imagine life without him. He
brings immense joy to my life everyday and can make me
laugh at the drop of a hat. My husband is the best husband I
could ever dream of and I wouldn’t
trade him for the world.
It’s safe to say I have a love/hate relationship with hemophilia itself. I hate the pain my husband deals with on a daily
basis. I hate that it takes him away from activities he’d love
to participate in but can’t due to the high risk of a bleed or a
bleed that he’s currently recovering from. I hate my frustration at explaining why he can’t just take more Vitamin K and
be cured.
But even with the negatives, there are always positives, and
in this case, there are quite a few. I love our hemohana and
the wonderful people I’ve met through this community, who
astound me with their strength and wisdom. I love the fact
that because of hemophilia and what it has brought to my
husband’s life, it has made him who he is today. The loss,
sorrow and joys of his experiences living with hemophilia
have made him into an amazing man whom I adore with all
my heart. I am proud to be his wife and am honored to continue to grow in this life with him by my side.
That being said, marriage is sometimes hard and the “perfect” relationship is a myth. Relationships
aren’t ever actually perfect. The
truly best relationships are the
honest ones where both people
never give up, and the wife of a
hemo never gives up.
Being married to someone with
a disability can at times be even
harder than your typical relationship, especially when it’s a disability that the average person cannot
see or may have never heard of. Explaining to others the short notice
for canceled plans due to a bleed
or educating them on how my hus- Stephanie and her husband Jeff, who has hemophilia.
band’s medicine isn’t just taken
like a pill can be tiring, and not many people understand, A great quote from an unknown author said, “A great
marriage doesn’t happen because of the love you had in the
but that’s okay. We have a community here that does.
beginning, but how well you continue building love until the
There’s a reason why my husband calls his hemo friends, end.” Every day is a blessing, good or bad, that I may have
especially his blood brothers, his “hemohana” — a term he the pleasure of knowing and loving my hemophiliac. I love
coined by combining “hemo” with “ohana,” the Hawaiian my hemo-honey and I couldn’t ever imagine my life without
word for family. They’re all our family, our “hemohana” be- him. Or without hemophilia.
cause no one is forgotten, no one gets left behind. Having
that kind of support and quiet empathy during those tough Stephanie and her husband Jeff live in Oregon. n n
times when all you want is a shoulder to cry on is a relief we
all can understand, “hemo” and “clotter” alike.
Winter 2014 | Dateline Federation
27
NON PROFIT ORG
US POSTAGE PAID
LAFAYETTE, LA
Permit No. 735
820 First Street, NE | Suite 720
Washington DC 20002
www.hemophiliafed.org
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MARCH 26-28, 2015
St. Louis, Missouri
GATEWAY TO A STRONGER COMMUNITY!